Learn more about the Resource Directory

Welcome to the St. Mary’s Healthcare System Resource Directory

This resource directory is for families/caregivers of children who have medically complex needs or long-lasting conditions that require extra health care and support services.

The information in this directory is provided to help you find resources to assist you with finding help for your child and family. The range of care/disability/health issues varies amongst children so the information may or may not pertain to your child.

What you'll find

After a family learns that their child is ill parents/caregivers typically begin to think about how they can best care for their child. The resources in this directory include agencies, service providers, advocacy organizations, and other resources to assist with providing a quality life for children with medically complex needs.

To find a resource enter your area of interest in the search box on the side bar and the location in the box located on the top of the screen. The directory is intended to assist you with being the best advocate for your child. Although we attempt to keep the directory current resources change constantly.

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All Resources

  1. Friends of Karen friendsofkaren.org

    Provides emotional, financial and advocacy support for children with a life-threatening illness and their families.

    Contact Information

    212-308-1378

    Address

    116 East 16 Street, 5th Floor, New York, NY 10003

  2. Healthy Children healthychildren.org

    Provide information/resources from the American Academy of Pediatrics.  Includes information on chronic illnesses and how to help your child.

    Contact Information

     

     

  3. Medline Plus nlm.nih.gov

    National Institues of Health’s website for patients and their families and friends. Provides information about diseases, conditions, in language you can understand.  You can also get links to the latest medical research on your topic or find out about clinical trials on a disease or condition.  English/Spanish.

  4. Orphanet orpha.net

    Information on rare diseases and new drug treatments from all over the world.  Several languages.

  5. Brave Kids bravekids.org

    Website has information on children’s illnesses and disabilities, message boards for parents & kids and a resource guide that you can search by zip code.

  6. Angela’s House angelashouse.org

    Residential group home for technology dependent children.  Also provides case management for non-Medicaid & Care at Home children.

    Contact Information

    Phone: 631-979-2620

    Address

    P.O. Box 5052, Hauppauge, NY 11788

  7. DREAMMS Assistive Technology for Children with Special Needs DREAMMS.org

    Facilitates technology access for children with special needs.  Information clearinghouse and search facility.

  8. The Queens Community House queenscommunityhouse.org

    Provides programs and services which help people improve their lives.  Provides housing assistance, financial literacy workshops, and citizenship classes.  Bengali, Chinese, French, Pashto, Russian, Spanish.  Do not have to be a documented immigrant to receive services.

    Contact Information

    Immigrant Specific Site:   718-898-7461

    Main Site:   718-592-5757

    Address

    Immigrant Specific Site: 74-09 37th Avenue, Suite 421, Jackson Heights, NY 11372 Main Site: 108-25 62nd Drive, Forest Hills, NY 11375

  9. Find a Friend

    Support groups for parents or caregivers of children with any chronic disease or special needs.  English group meets the 1st Tuesday of the month, from 12-1:30.  Spanish group meets the 2nd Monday of the month, from 12-1:30.

    Contact Information

    718-741-2223

    Address

    The Children's Hospital at Montefiore, 3415 Bainbridge Avenue, Family Learning Place, Bronx, NY 10467

  10. National Respite Locator Service archrespite.org

    Helps parents & caregivers find respite services in their state and local area to match their specific needs.  The database is provided for informational purposes only and is not all-inclusive. The fact that an organization is or is not listed in the database does not represent an endorsement or lack of endorsement for any purpose.